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So I've had a second opinion from a professor of dermatology who said he was pretty sure i did have LS. I've had different people telling me different things. He sai if it wasnt LS then he said either lichen planus or simplex. He suggested a biopsy but thats out of the question for me due to other issues. I'd been using dermavate but it's not responded. He's suggested i try Protopic, although he did say some people get warming sensation which could be unpleasant and also zinc oxide once its under control.
I read last night that when applying the dermavate you should gently massage it in for approx 90 seconds. I hadnt been doing that and am wondering if thats why its not worked. Is that how other people apply it? Not that keen on the idea of the protopic so wondered if to try the Dermavate again. Ive tried baby cream and thats not helped. I also read on here a post from a lady who got relief from olive oil on the sores so don't if thats a good thing to try first. Am massively confused. Ive got lots of health problems and this feels like the final straw. Difficult to get my head round it all. The dermatologist also suggested dermol lotion to moisturise. Is this the best thing to use?
Sorry about the rambling post! Am not getting much sleep at the moment.
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Dear Joanne - oh so sorry for your multiple discomfort issues. This one can get better!
So YES, the 90 second gentle rub in in circular motion is how it is used - all of the emollients/steroids. I've never used the steroids myself, but the aloe vera gel with tumeric drops added also works, and the olive oil or other oils in between the steroid dosing if using. ALSO, we've been advised that part of the reason for the hot baths soaks is that the warm water softens the skin and opens the pores and preps it for receiving whichever ointment/cream etc we are applying afterwards.
I personally also find that hot baths reduces the itching (grin, especially having been a lifelong poison ivy sufferer who knows how to manage that) Hot water actually does the scratching for you without the tearing that finger nails would cause....
Have your read upon the autoimmune nutritional protocol yet? The Vitamin D3 and cofactors? those will also really help reduce the pain etc. hugs... oh! and use melatonin that should help with the sleep too.
If the steroid didn't work for you I think medically speaking an immunosuppressant is the next step. Where did you read that rubbing the steroid in for 90 seconds is the way to apply it? I read that only here in a post, but my doctor did not suggest it. Why not call your doctor's nurse and ask what he recommends . You have to gather and weigh info and do what you feel most comfortable with.
Since being diagnosed (5 months) I have been following my gyn's advice. Fortunately, I have been having good luck with a mid-level steroid. I had already been using organic coconut oil as a moisturizer for atrophy (which this new gyn enthusiastically approves of). But she does stress that only the steroids will keep LS in check; moisturizers (oils, baking soda, etc) only soothe and make us more comfortable. Although she said lack of estrogen was what caused my LS, using hormone cream has greatly affected my AV, not the LS.
As I understand it both problems require application of the appropriate meds : hormone cream consistently for the AV and steroid ointment as needed for the LS.
Did either doctor show you photographs? Maybe it would help to distinguish what condition you might have. I will PM a link to an article to you that mentions a full history being required to help with a diagnosis as well. Maybe you have already seen it.
olive oil is good to soothe and moisturize, but I would not put it on open sores. Everyone is different and it may hv worked for someone, but it burned me and I had to use a cool washcloth to blot it off! The Clobetosol or Dermovite does need to be rubbed in for 90 seconds in order to penetrate down through the skin to get to our T- cells which are attacking our own body. Just applying to the surface will NOT work.
Hope this helps!
There's a medical presentation on here on this site from a leading LS specialist - Dr Goldstein - in which he presents the evidence for spending 60 - 90 seconds gently rubbing in the medication for all the reasons someone else also set out in one of the replies. Please trust that this condition can be improved. Every best wish.
Dermol lotion is quite thick try YES moisturiser as it is all natural, it is now available by prescription i even saw it in Superdrug last week, It is the white tube not the lubricant. It really helped me, i tried coconut oil but i like YES now and it lasts a long time. i have used dermovate especially for flare ups and im lazy havent rubbed it in for that long but it still should work x
Someone posted in an older conversation that the skin on the finger she used to apply the steroid got so thin that dental floss went right through it. Wonder if she was rubbing the steroid in for 5 minutes. I just apply, no rubbing as I wasn't advised to and it has worked fine. Perineum still a tad dry and one edge of labia, otherwise good; using twice a week. But I have never experienced any sores and had assumed any changes were due to atrophy.
Yeah I think the sores are from meno atrophy, they are symetrical each side also. They get checked by my GUM clinic as the NHS in my area dont keep a check yearly on L S anymore. The GUM clinic keep a check for my reassurance x
sue, do you use hormone cream for the atrophy? It really is very effective.
Good luck with the Protopic! I used it only once and experienced major burning of my labia all day long.
I was diagnosed with LS 4 years ago and have had a couple of flare ups - I am having one at the moment so went to see my Specialist who suggested using Dermovate every day for a month, then every other day for a month and then every 3 days for a month. Also, I hadn't realised I was supposed to apply it at night, as had been using during the day. It is much better doing at night but when shower in the morning, I use E45 shower cream to stop myself drying out! Also, if too uncomfortable in the day, I use Emuaid which nautural but stings for few seconds when apply but then eases the pain and discomfort. I feel for anyone with this condition as it can really take over your life at times and also it is an embarrasing thing to talk about plus taking the edge off with husband in bed!
If I drink wine, I can feel a burning sensation down there, so have cut down alot. I still like hot baths and find them soothing. Cotton underwear and don't wear jeans too often or tights as agrevates.
I wish you well and all of you out there with this!
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